JMIR Publications

ABSTRACT

Background:

Informal caregivers (ICs), often family members or close friends, provide essential support to individuals with head and neck cancer (HNC). However, they are frequently unprepared for the emotional, practical, and medical challenges involved. Web-based applications offer promising opportunities to support ICs, but their long-term adoption and acceptance remain uncertain.

Objective:

This paper presents the development of Carer eSupport, a web-based application to support ICs’ well-being and preparedness for caregiving. We detail the design and functionalities of the Carer eSupport application, and explain how it responds to both the functional and physiological needs of ICs. Additionally, we report findings from the internal pilot study and highlight the initial challenges ICs faced when engaging with the application and the strategies employed to overcome these issues.

Methods:

The study involves a multicentre research trial across ear, nose and throat (ENT) clinics and oncology and radiotherapy clinics at four university hospitals in Sweden. The application was developed through three HCD iterations involving ICs, healthcare professionals, and researchers in human-computer interaction and cancer care.

Results:

The results present an overview of the current version of Carer eSupport (developed during the third design iteration), with a focus on features that address the psychological needs of ICs, including competence, autonomy, and a sense of connection to others. The internal pilot study achieved a 66.7% consent rate, a 75% successful login rate among participants, and a 13.3% attrition rate, meeting the established criteria. The pilot study confirmed the application’s readiness for further evaluation in an ongoing randomised controlled trial. It also identified challenges, including time constraints of ICs, login and authentication issues, limited IT infrastructure, and gaps in digital literacy.

Conclusions:

Findings from the HCD process and pilot study indicate that a personalised, interactive application like Carer eSupport can provide meaningful support for ICs of individuals with HNC. The integration of HCD and healthcare science offers early guidance for developing digital tools that are both evidence-based and empathetic, with potential relevance beyond caregiving contexts.